PEDIATRICS, INTENSIVE CARE IN

While sickness and death are an inevitable part of the human condition, they are never expected in childhood. Even though the number of pediatric intensive care unit (ICU) beds is only a small fraction of the number of adult ICU beds, the practice of pediatric intensive care medicine raises a disproportionate number of complex and unresolved ethical issues, including those related to decision making for critically ill children as well as issues related to end-of-life care in this setting.

Informed Consent

Children in the intensive care unit often have diminished capacity to participate in decision making, either on the basis of their age, their illness, or a combination of both. Although these children are noncompetent in terms of their capacity to give informed consent, they differ from noncompetent adults in several important ways. For example, most of the important legal cases involving noncompetent adults have concerned patients who were never expected to regain competency, that is, adults with chronic and usually progressive medical problems. Children are different, because in most cases their competency and decision making-capacity is expected to recover and grow. Therefore, with adults the emphasis is on respecting their former autonomy; with children the challenge is to faithfully preserve options for their future autonomy.

CHILDREN NOT ABLE TO PARTICIPATE IN DECISION MAKING. Children in the intensive care unit are often very ill, and many require high levels of analgesia and sedation to tolerate life-sustaining treatments such as mechanical ventilation. In addition, from the newborn period through early childhood, even healthy children are not able to participate in decisions about their medical care. For all these patients, parents are generally viewed as their surrogate decision makers. Up until the nineteenth century or so, children were seen essentially as the "property" of their parents, and parents were seen as having a "right" to make these medical decisions. Although this is no longer the case, the presumption in favor of parental decision making is based upon several persuasive considerations:

1. Parents have strong emotional bonds to their children and are powerfully motivated to make decisions that are in the best interests of their children;
2. An assumption is made that children will grow up to espouse many of the same values as their parents, therefore parental decisions are more likely to resemble the kinds of decisions that children will make when they become competent;
3. Parents will usually have to shoulder and live with the consequences of the decisions that are made on behalf of their children (including financial obligations), so they should have some say in making those decisions; and
4. Parents are held responsible for most of the nonmedical decisions that need to be made on behalf of the child (housing, food, schooling, etc.), so they should have responsibility for the medical decisions as well.

An interesting and largely unresolved question is how to balance the interests of the child against the interests of the family as a whole when these are in conflict. Consider, for example, a child who has sustained severe brain injury following an accident, and the family is given the option of either withdrawing life support and allowing the child to die or continuing with treatment that will likely lead to survival of the child with severe disabilities. Is it legitimate for the parents to factor the interests of the family as a whole into their decision, and to consider the impact (psychological, financial, spiritual, etc.) that raising a severely disabled child will have on other members of the family? The traditional view has been that only the best interests of the child should be considered. Yet families with children are profoundly interdependent, and parents often have responsibility for fairly balancing the interests of one family member against another, such as in the way that financial resources are distributed for various needs, projects, and interests. Because parents are rarely required to fully account for the reasons behind their decisions about life-sustaining treatments, it is likely that these potential conflicts are operative but remain unarticulated and unexplored in many of these situations.

CHILDREN ABLE TO "ASSENT" TO MEDICAL TREATMENT. The concept of "assent" to treatment for pediatric patients was first proposed by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in the 1970s. Based upon knowledge of normal childhood development, this commission proposed that children between the ages of seven and fourteen should be asked for their assent to medical treatment. Above the age of fourteen, they suggested, children should generally be presumed to have full decision-making capacity. In an article published in 1998 in the American Journal of Law and Medicine, Leonard H. Glantz observed that this "rule of sevens" has also appeared in legal decisions, with the view that below the age of seven a child is irrebuttably decisionally incapacitated, from seven to fourteen years there is a rebuttable presumption of decisional incapacity, and for those between fourteen years and the age of majority there is a rebuttable presumption of decisional capacity.

The American Academy of Pediatrics (AAP) extended this concept in 1995, claiming that the entire "doctrine of 'informed consent' has only limited direct application in pediatrics. Only patients who have appropriate decisional capacity and legal empowerment can give their informed consent to medical care. In all other situations, parents or their surrogates provide informed permission for diagnosis and treatment of children with the assent of the child whenever appropriate" (bold and italics in original) (Kohrman et al., p. 314).

In its definition of the term, the AAP said that "assent" should include at least the following elements:

1. Helping the patient achieve a developmentally appropriate awareness of the nature of his or her condition;
2. Telling the patient what he or she can expect with tests and treatment(s);
3. Making a clinical assessment of the patient's understanding of the situation and the factors influencing how he or she is responding (including whether there is inappropriate pressure to accept testing or therapy);
4. Soliciting an expression of the patient's willingness to accept the proposed care. (Kohrman et al., p. 315)

Regarding this final point, the AAP added: "no one should solicit a patient's views without intending to weigh them seriously. In situations in which the patient will have to receive medical care despite his or her objection, the patient should be told that fact and should not be deceived" (Kohrman et al., p. 316).

"EMANCIPATED" AND "MATURE" MINORS. Two legal categories that give special status to patients under the age of majority also need to be mentioned (Holder). Emancipated minors fall into a legal category that grants certain individuals under the age of majority all of the rights of an adult to consent to medical care. State laws vary, but most states specify by statute the conditions under which a minor is considered emancipated. Generally, minors are emancipated when they are married, are parents, or are on active duty in the armed forces. In some jurisdictions minors are emancipated when they are above a certain age (e.g., sixteen years), are not financially supported by their parents, and are either not subject to parental control or their parents have consented to their emancipation (note that runaways would therefore not generally be considered emancipated).

Many states have either statutory or case law for the treatment of "mature minors." Mature minors are not emancipated, but they may nevertheless have the legal power to consent to some forms of medical treatment. Although the mature minor concept provides legal protection to physicians who treat adolescents, the patient's parents are not financially responsible for treatment rendered without their consent.

Conflicts among Clinicians, Patients, and Patients' Parents

Just as adolescents may have the capacity to participate in their decision making, they are also well known to have the capacity for (what most adults regard as) irrational behavior. Billy Best, for example, was a sixteen-year-old patient diagnosed with Hodgkin's disease in 1994. He and his parents were told he had an 80 to 90 percent chance of cure with chemotherapy and low-dose radiation. Although he reportedly had only "minor" side effects from the chemotherapy (including hair loss, nausea, and fatigue), after several months he refused treatment and ran away from home. This situation was resolved only when his clinical team chose to honor his refusal of treatment while still monitoring him for evidence of cancer.

Clinicians and parents have not always refrained from imposing standard treatment, however. In New York in 1991, for example, a fifteen-year-old was diagnosed with an anterior mediastinal tumor. The patient's father had died of carcinoma of the lung four months earlier. Based largely upon his phobia of needles, the patient refused to undergo diagnostic surgery. His mother asked the court for an order directing the child to submit to surgery. The court found that surgery was urgently required and ordered the sheriff's department to take him to the hospital, restrain him if necessary, and supervise him while he was in the hospital.

These two cases illustrate the kinds of problems that arise in the gray area of late adolescence, when patients do not yet have the nearly unqualified rights of adults to refuse medical therapy, yet parents no longer have the authority to mandate their children's treatment. The best recommendation that can be made is for clinicians to attempt to persuade adolescents regarding the optimal approach to their care. When these recommendations are refused, however, clinicians must decide whether this refusal is reasonable, all things considered, or whether it is in the patient's best interest to seek a court order imposing the standard therapy. When in doubt, the bias should be toward potentially life-prolonging treatment, because this is the path that is least likely to foreclose options for the patient as she matures into a fully functioning autonomous adult.

End-of-Life Care

Just as pediatric intensivists need to have coherent strategies and plans for managing patients with clinical syndromes such as acute respiratory or renal failure, so they need to have a systematic approach to caring for children who are dying. The most important components of this approach relate to the "mechanics" of withdrawing life support and to the provision of sedation and analgesia.

WITHDRAWAL OF LIFE-SUSTAINING TREATMENTS.

Although pediatric ICUs have a much lower mortality rate than most adult ICUs, they are similar in that an increasing proportion of deaths follow the withdrawal of life-sustaining treatment. One survey of adult ICUs found that 90 percent of the deaths followed a decision to limit therapy (Prendergast and Luce). Similarly, a study of more than 100 consecutive deaths in three Boston pediatric ICUs found that about twothirds of the deaths followed the withdrawal of life-sustaining treatment (Burns et al.). In the Boston study, the treatment withdrawn in all cases was mechanical ventilation, reflecting that the cause of death in children in the ICU is very often related to respiratory failure, in contrast to adults where the proximate causes of death are more diverse.

SEDATION AND ANALGESIA AT THE END OF LIFE. Current ethical and legal guidelines place importance upon the intentions of clinicians in administering analgesics and sedatives at the end of life. Specifically, clinicians should administer doses that are intended to relieve pain and suffering but that are not intended to directly cause death. Because intentions are essentially subjective and private, the only ways to infer the nature of an individual's intentions are by self-report and by an analysis of his or her actions. Accordingly, documentation of one's intentions in the patient's chart is an important part of providing end-of-life care. For example, when a clinician administers morphine in small doses every ten or twenty minutes, it is plausible to conclude that the clinician intends to make the patient comfortable and not to directly cause the patient's death. On the other hand, when a clinician administers a large dose of morphine to a patient who is not profoundly tolerant, it is difficult not to conclude that the clinician did in fact intend the death of the patient (Truog et al., 2001).

Although ethical and legal guidelines require that sedatives and analgesics be administered in doses based on the patient's comfort, they provide little advice about what to do when the clinician and the family disagree about whether or not the patient is comfortable. Consider a patient who is near death and having "agonal" respirations. The family may find these very distressing, despite reassurances from the clinicians that the patient is unconscious and not experiencing any pain or suffering. Should the physician administer additional opioid to the patient, with the intention of making the patient appear more peaceful for the benefit of the family? Although controversial, many pediatric intensivists would do so, on the ethical grounds that doing so may be of great benefit to the family members in terms of how they remember the child's death, while the potential for this action to harm the patient is small.

TERMINAL EXTUBATION VERSUS TERMINAL WEAN. A systematic approach to ventilator withdrawal at the end of life was first proposed in the early 1980s, with this approach involving a gradual reduction in the ventilator settings over several hours. Since then, there has been an ongoing debate regarding the best method of withdrawing mechanical ventilation.

One recommended approach, commonly referred to as "terminal extubation," involves the removal of the endotracheal tube, usually following the intravenous administration of sedatives and/or analgesics. The second technique, known as a "terminal wean," is performed by gradually reducing the amount of supplemental oxygen the patient is receiving and/or the rate at which the ventilator is providing breaths to the patient, leading to the progressive development of hypoxemia and hypercarbia. In the latter technique there is considerable variability in the pace of the process, with some completing the wean over several minutes and others stretching it over several days (Truog et al., 2001).

The preferred approach varies widely. A 1992 survey of critical-care physicians found that 33 percent preferred terminal weaning, 13 percent preferred extubation, and the remainder used both. These preferences were correlated with specialty: surgeons and anesthesiologists were more likely to use terminal weaning, whereas internists and pediatricians were more likely to use extubation (Faber-Langendoen).

The principle advantage of the terminal wean is that patients do not develop any signs of upper airway obstruction during the withdrawal of ventilation. They therefore do not develop distress from either stridor or oral secretions, and if the wean is performed slowly with the administration of sedatives and analgesics, they do not develop symptoms of acute air hunger. These advantages not only promote the comfort of the patient but also reduce the anxiety of the family and caregivers.

Another cited advantage of terminal weans is that they are perceived to diminish the moral burden of the family and caregivers, presumably because the terminal wean is perceived as being less "active" than terminal extubation. Whether this is an advantage or disadvantage remains controversial. There is a risk that terminal weans—particularly those in which the wean is prolonged over several days— may be perceived by families as bona fide attempts to have the patient successfully survive separation from the ventilator, even when this is not the expectation or intent of the clinicians. Terminal weans therefore should not be adopted as a means of avoiding difficult conversations with families about the patient's condition and prognosis.

In contrast to terminal weans, the principle advantages of terminal extubations are that they do not prolong the dying process and that they allow the patient to be free of an "unnatural" endotracheal tube. The process of terminal extubation also is morally transparent; the intentions of the clinicians are clear, and the process cannot be confused with a therapeutic wean.

Despite the tendency for clinicians to use only one of these approaches based upon their specialty training, the relative advantages and disadvantages of each suggest that both approaches have a role in end-of-life care, and that the technique used should be tailored to the needs of the patient, rather than just the preferences of the clinician.

PARALYTIC AGENTS. Neuromuscular blocking agents (NMBAs) are required occasionally for the management of critically ill patients, primarily to facilitate the use of nonphysiologic ventilatory modes such as high-frequency oscillation. When a decision is made to withdraw ventilator support from a patient who is paralyzed by these agents, there is a question as to whether the effects of the medication need to be reversed or allowed to wear off before the ventilator is withdrawn.

Neuromuscular blocking agents possess no sedative or analgesic activity and can provide no comfort to the patient when they are administered at the time of withdrawal of life support. Clinicians cannot plausibly maintain that their intention in administering these agents in these circumstances is to benefit the patient. Indeed, unless the patient is also treated with adequate sedation and analgesia, the NMBAs may mask the signs of acute air hunger associated with ventilator withdrawal, leaving the patient to endure the agony of suffocation in silence and isolation. While it is true that families may be distressed while observing a dying family member, the best way to relieve their suffering is by reassuring them of the patient's comfort through the use of adequate sedation and analgesia, rather than by simply paralyzing the patient (Truog et al., 2000).

PRACTICING PROCEDURES ON THE NEWLY DECEASED.

Practicing procedures on newly deceased patients has been a source of controversy between physicians and society dating back at least to the Middle Ages. This is an especially relevant issue for pediatric critical-care medicine, where practitioners have an important obligation to practice and teach resuscitation procedures.

Some have argued that it is ethically justifiable to perform practice procedures on the newly dead without permission from the family because these procedures cannot harm the deceased, because there is a substantial societal benefit to be gained, and because families could not realistically be expected to discuss consent at such a difficult time (Orlowski, Kanoti, and Mehlman). Moreover, a study showed that 39 percent of training programs in emergency and critical-care medicine use newly dead patients to teach various resuscitation procedures (for example, endotracheal intubation, central line placement, and pericardiocentesis). Few of these programs obtain either verbal or written consent from the families (Burns, Reardon, and Truog).

Despite the frequency of this practice without consent, some have argued that teaching procedures on newly deceased patients is ethical only when permission is first obtained from the family. Unquestionably, newly dead patients offer opportunities to practice resuscitation techniques that are difficult or impossible to learn in other ways without exposing living patients to additional risk. While seeking permission from family members to practice resuscitation procedures may generate additional stress at a time when the clinicians are most concerned with reducing it, they argue that this does not justify practicing without consent (Burns, Reardon, and Truog).

robert d. truog

SEE ALSO: Adolescents; Autonomy; Beneficence; Children; Competence; Grief and Bereavement; Infants; Information Disclosure; Informed Consent; Life, Quality of; Life Sustaining Treatment and Euthanasia; Moral Status; Palliative Care and Hospice; Surrogate Decision Making

BIBLIOGRAPHY

Burns, Jeffrey P.; Mitchell, Christine; Outwater, Kristen M.; et al. 2000. "End-of-Life Care in the Pediatric Intensive Care Unit after the Forgoing of Life-Sustaining Treatment." Critical Care Medicine 28: 3060–3066.

Burns, Jeffrey P.; Reardon, Frank E.; and Truog, Robert D. 1994. "Using Newly Deceased Patients to Teach Resuscitation Procedures." New England Journal of Medicine 331: 1652–1655.

Faber-Langendoen, Kathy. 1994. "The Clinical Management of Dying Patients Receiving Mechanical Ventilation: A Survey of Physician Practice." Chest 106: 880–888.

Glantz, Leonard H. 1998. "Research with Children." American Journal of Law and Medicine 24: 213–244.

Holder, Angela R. 1987. "Minors' Rights to Consent to Medical Care." Journal of the American Medical Association 257: 3400–3402.

Kohrman, Arthur; Clayton, Ellen Wright; Frader, Joel E.; et al. 1995. "Informed Consent, Parental Permission, and Assent in Pediatric Practice." Pediatrics 95: 314–317.

National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1977. Research Involving Children: Report and Recommendations. Washington, D.C.:U. S. Government Printing Office.

Orlowski, James P.; Kanoti, George A.; and Mehlman, Maxwell J. 1988. "The Ethics of Using Newly Dead Patients for Teaching and Practicing Intubation Techniques." New England Journal of Medicine 319: 439–441.

Prendergast, Thomas J., and Luce, John M. 1997. "Increasing Incidences of Withholding and Withdrawal of Life Support from the Critically Ill." American Journal of Respiratory and Critical Care Medicine 155: 15–20.

Truog, Robert D.; Cist, Alexandra F. M.; Brackett, Sharon E.; et al. 2001. "Recommendations for End-of-Life Care in the Intensive Care Unit: The Ethics Committee of the Society of Critical Care Medicine." Critical Care Medicine 29: 2332–2348.

Truog, Robert D.; Burns, Jeffrey P.; Mitchell, Christine; et al. 2000. "Pharmacologic Paralysis and Withdrawal of Mechanical Ventilation at the End of Life." New England Journal of Medicine 342: 508–511.